Since suffering from severe chronic migraines for the past ten years i haven't had the freedom most kids/teens have had, my gramp's likes to say i've been robbed of my teenage years due to how ill i've been. Im 18 and when it comes to relationships i back away, how do you explain to a normal healthy person that a relationship with me will be way different to how it'd be with someone else, explaining how i might suddenly faint or loose the power to speak. When do u find the right time to suddenly say 'i really like you but i might not remember your name some days because i have chronic migraines' . I don't want to feel like the persons stuck with me because they feel sorry for me....

I really want to just be a teenager without the constant cloud over me.

12 Replies

I think you may find that you are not such an odd one out. You'd be surprised how many people suffer from migraines and a world of other conditions which make them less than perfectly healthy. You are being too hard on yourself. Migraines are miserable... Far more so for the person who has them than for the person who lives with someone who has them.

But chronic migraine is very different, and more especially so than that the more severe chronic migraine suffering. It really is very different from being merely a migraine sufferer.

2 years agoHidden

If someone cares about you they understand, you really find out who your friends are when you have a chronic illness/disability.

Have you ever been referred to a pain clinic or had an MRI to determine whether you have slipped discs?

2 years agoHidden

Hello,

It sounds like you have a really tough time with your migraines but, as one of the other posters said, there are plenty of other people who also have chronic health conditions that affect them daily. Don't define yourself by your condition. Yes, it is tough to live with, but there is still plenty you can do and there is more to you than your migraines.

Good luck and make the most of your teenage years - they don't all revolve around having a boyfriend or girlfriend!

I really feel for you. Have you seen a specialist, or visited the National Migraine Centre?

Once you have the migraines more under control you will catch up with some of what you've missed. Lots of things other people are doing sound better than they really are anyway.

Here's a couple of migraine blog sites that might help a bit with that feeling of isolation, and give you info on management - migraine.com and migrainemonologues.com.

I remember one day feeling hopeless about myself due to the life limiting effects of the migraine - I was going for a hair cut and hoping I wouldn't have a dizzy spell during it. There was a young hairdresser who was talking about how he had a dizzy, faint spell as a migraine started on his walk to work a few days earlier. He had to sit down, couldn't walk any further, but eventually managed to get home. He was very matter of fact about it and went on to talk about the band he played in, nights out etc. Strangely it made me feel better, because here was someone else experiencing the same thing as me and yet was living a mostly normal life and was obviously accepted by his colleagues and friends.

I've had the same thing at the barbers - I start to say I have frequent or chronic migraines - and then I get "Oh I've had terrible migraines", and other places, and anyone you meet.

But if you are a chronic migraine sufferer, the truth usually is you cannot be compared to the other people who mention it as if they are in a terrible position too. Often, it is terrible for them, but not a completely overturned life or even ruined life like many, many, many chronic migraine sufferers.

Chronic migraine, and very frequent migraine of a frequency of suffering which is not dissimilar to chronic migraine is incomparable to anything else. It's not in the same world as with other migraine sufferers.

You do need to be realistic, I think. When the barber tells you that they got or get these terrible migraines, and couldn't make it to work once, twice, even a handful of times, you do need to think about the real situation.

If there is no way you could hold down ANY regular or daily job (like myself, for well over a decade now), you need to be aware of the vast difference between yourself and these other people who work 9 to 5 or whatever practically every day of the year. OK, so maybe they've had to go off work 5 days in the last year - or maybe 10 to 14 days even, and making it in to work other days was a struggle.

That is hard to bear, it really is. But honestly, it's light years away from many chronic migraine sufferers, who cannot even make basic appointments - ANY, ever - thinking they will make them. They just have to make the most necessary ones, and hope. Often they are rescheduled and rescheduled again, this is how I've had to live. Aside from that, you can try to make other appointments or meetings, but 8 or 9 times out of 10 with me, it's likely I won't make it.

This is chronic, crippling illness. This is what it does. It REALLY is SO different from other conditions, and temporary suffering which are terrible in being unpredictable and terrible to bear, but aren't frequent, comparably.

It's a completely, completely, completely, different world. Utterly.

The thing is that many, many people who do suffer migraines, even reasonably frequent migraines, one a fortnight to one a week, still do not realise just how different it is to suffer from chronic migraine most days of the week, to nearly every single day, to actually every single day of every week and month.

You're right, Icb10, and I too began suffering daily (chronic) migraine nine years ago having had fairly frequent migraine since I was 14, worsened after a head injury. So I understand what you're saying and you've explained it very well. The vast majority of people don't get it at all which is even more difficult. At the word 'migraine' their eyes glaze over and they begin to judge you as being a weak person who can't deal with a bit of a headache, or a malingerer. The only medical people who understand are those who experience it themselves, which is virtually none as they wouldn't be working in the medical profession with such a condition, they simply wouldn't be able, as you say, to make basic appointments, let alone run a medical practice. I'm now down to weekly/ten days due to my own efforts and research, but still never know on which day the migraine will strike or how severe it will be.

In mentioning the hairdresser, I just wanted to say that there are people with different degrees of migraine disability and some of them are able to led a fairly normal life: also migraine can change, and I wanted to offer MigraineGirl some hope for the future.

I feel for you, it is tough, I had migraines like this as a teenager and so do my teenagers now who have autoimmune conditions, Systemic Lupus and Hughes Syndrome/APS Until the Hughes Syndrome/APS was treated the migraines did not get better either for them or for me. The blood tests are simple to do. home.bt.com/lifestyle/wellb...

Not a had idea to have the tests done even if only to rule Hughes Syndrome/APS out. Best to do the tests at he hospital blood test centre as the samples are affected by time if they hang about in a GP surgery for collection. hughes-syndrome.org/about-h...

You would be amazed how many lovely caring people there are out there who are much more interested in who you are than anything else, and are perfectly comfortable with a few problems. Ideally you'll get around to warning them before you forget their name (I lose my words long before the pain starts) but believe me, for the right person it won't matter once they understand.

I had a cousin crippled with juvenile RA, walked with crutches, horribly deformed hands who met and married a lovely man. He just said it was a privilege to care for her a bit more than some other woman might need.

I know how you feel I was 14 when I started having blackouts & dizzy spells.

I really isolated myself I had one in school and wasn't allowed to do my exams or return. My friends came to my door for a full summer and I wouldn't come out for fear of it happening with them again.. Think of what your advice would have been to me probably much like I am going to say lol

You don't need to worry, for one you are only 18 and being in a relationship isn't all its cracked up to be.

I always hid it from anyone I went out with which is really daft and dangerous.. As I grew up I realised it wasn't such a big deal to other people. It's okay for people to feel sympathy it just means they care. You will come out of this some day The right person really won't mind ... I've had the odd year without these symptoms the dizzy spells are back just now but I'm not letting it get me down. You are in control of your own happiness..

I know it's hard to see other teenagers taking for granted the normal teenage things you want to do. Their lives probably seem so much better, but everyone is going through stuff.. They probably have their problems too.

Please find a Support Group. There must be gazillions of us in the world who get Migraines. We chat here but I'll bet there are many who meet up (unless they're in aura). At least you won't feel so alone. You have remarkable insights to bring to a relationship with someone who is deeper than a kiddie pool!!!

Yes. Well said. There are others trying to cope with the same thing. It may help, it may not. Give it a go.

To be honest, the best advice to me seems to be that you ought to be completely realistic. That to me seems to be that it is a good guess that the majority of people would not be able to cope with a romantic relationship with a chronic migraine sufferer.

Of course, many people think that they know if they'll meet a right person for them, and after that it doesn't matter about the circumstances. However, these people, when it comes down to it must be in a minority. Everyone wants the kind of life they want. For some people that means caring more, rather than fulfilling dreams about jobs and social life and interests, hobbies, sports etc. So there is still a lot a hope you may find that kind of person. But being realistic, of course, it seems to me, it must be more difficult.

When I was a teenager - mid, late, early - before I even knew what a terrible migraine even really felt like, I came to accept that I probably just wasn't up to a relationship with a chronically sick person. (Again, unless there was falling in love anyway, where the circumstances just wouldn't matter.) When I was a younger teenager, I was more optimistic and positive and thought I would probably be OK with a chronically sick person. By my late teens I realised that I could barely manage myself in adult life and also cope with someone who was in such an unfortunate position, needing so much.

But there are people different to me. (Funny I ended up with chronic migraine, though. But at least I think my awareness before means I'm in a position of realism, and sympathetic to how other people feel and what they can and can't do. This helps me more. I know it's normal, people can only do what they can do - it's common for them to be struggling to achieve even that alone.)

But, again, there must be a lot of very caring people out there, and you can be fortunate.